Reviewing Lisa Genova’s film “Still Alice”, and looking back at her 2008 critique of The Myth of Alzheimer’s (Part 2)

Yesterday, we reviewed “Still Alice”, a film based on a novel written by neuroscientist Lisa Genova. Today, we share our reactions to her initial critique of The Myth of Alzheimer’s, which also appeared on the Alzheimer’s Association’s blog, in 2008. As mentioned in the previous post, in an effort to take the high road, we had resisted responding directly to Lisa when we first saw her critique. However, the past 7 years have witnessed so many scientific and social developments in the Alzheimer’s field that we felt it important to revisit her key arguments from the vantage point of 2015. Generally, in re-reading Lisa’s critique, we found it to contain presuppositions and distortions, both in its misinterpretation of the central message of our book and with regard to the scientifically-inaccurate arguments about Alzheimer’s disease. Below, we have posted full passages from Lisa’s post and added our thoughts:

Peter Whitehouse and Daniel George wrote a book called The Myth of Alzheimer’s. In it, they claim that “there is no such thing as Alzheimer’s Disease.” “Alzheimer’s Disease represents our culture’s attempt to make sense of the natural process of brain aging that we cannot fully control.” So, in an attempt to control it, “we’ve created an antagonist” and named it Alzheimer’s Disease.

They claim that because we don’t know the “singular cause” of Alzheimer’s, because we can’t cure it, and because we can’t differentiate Alzheimer’s from normal brain aging, we should stop diagnosing people with this “label.” Labeling someone with Alzheimer’s only causes them harm from the stigma attached to it. We should stop treating people with Alzheimer’s medications, and we should certainly stop looking for a cure. Dementia is just normal aging, and you can’t cure aging.

A few thoughts:

1. In 2015, we are no more clear on what Alzheimer’s disease is, and scientists are rethinking the fundamental theories of causation that have dominated for a generation. The recent NIH Research Conference confirmed what we learned in prior such gatherings: that the “Alzheimer’s” is heterogeneous, clearly related to aging, and not a disease of amyloid alone. Indeed, in the scientific community, it is almost universally recognized that “AD” is not one thing. Ample studies from around the world have established that neuropathological markers of AD are heterogeneous and overlap with markers of normal aging and other dementias (frontal lobe, vascular, Parkinson’s, etc.).

Since all single-causation approaches to curing AD have failed, efforts are now being made to diagnose and treat “AD” decades before it begins. In 2011, new research guidelines published by the National Institute on Aging and Alzheimer’s Association restructured the disease around a theoretical framework of earlier causation and intervention. New categories “Preclinical AD” and “Mild Cognitive Impairment” ultimately aim to help researchers establish biomarkers for AD in presymptomatic stages – essentially shifting the goal-posts upstream after drugs have failed to improve cognition for people with dementia.

Taken together, the pathological, genetic (the reality that there are hundreds of genes that play a role in brain aging) and clinical (that clinical course varies greatly) heterogeneity of AD suggests that it is a catchall term for a variety of pathologies and clinical manifestations occurring on a number of different trajectories. It is more appropriately classified in plural form as “Alzheimer’s diseases”, and more broadly as a syndrome, or syndromes of clinical features. This fundamentally complicates claims to cure AD because it means we must find multiple “cures” to multiple age-related processes. It also raises a penetrating question that Lisa rejected off-hand: If AD is intimately age-related, then, in proposing to cure the condition are we aspiring to cure brain aging? And if this is the case, would it not be wise to strike a greater equipoise between providing resources for medical treatments, caregiver support, and prevention education than we have at present?

2. With regard to labeling, we never made the argument in The Myth that we should stop diagnosing people with AD, and, in fact, we even enumerated some benefits for the label: (1) it provides a sense of clarity (2) it reassigns blame from the person to their “disease”, (3) it enables access to healthcare resources. Our goal was for patients to feel empowered to challenge the probabilistic/uncertain labels applied clinically, and to know that there were other ways to approach brain aging that didn’t involve a highly stigmatizing disease concept. In fact, we created the fictional characters Fran/Frank specifically to contrast the conventional approach to an AD diagnosis with a more nuanced and humane approach.

Let’s start with cancer. We don’t know yet what causes cancer or how to cure it. We treat it with crude, non-specific poisons that risk the very life of the person who takes them. There used to be a HUGE stigma attached to having cancer. Remember when everyone called it “the big C?” Cancer is not caused by one singular process. It is caused by a complex interaction between genetic and environmental influences. Should we not call cancer a disease? Of course not. Do we not tell someone they have cancer because of the stigma that might be placed on them? Of course not. Do my chances of developing cancer increase as I age? Yes, they do. Is cancer a normal part of normal aging? No, it is not.

Likewise, we can think about heart disease. Do most people develop accumulations of plaque in their arteries as they get older? Yes, they do. If untreated, will most people develop cardiovascular disease if they live long enough? Yes, they will. So is having cardiovascular disease a normal part of normal aging? No. Over the course of 50-100 years, we, as human beings who eat fatty foods and don’t exercise enough, develop plaques that clog our blood vessels. This leads to decreased blood flow to the heart which leads to oxygen deprivation of the heart muscle which causes a heart attack. Do we just accept this as normal aging and do nothing about it? No, we do not. We diet and exercise. We go to the doctor and get tested to see how much plaque we might have blocking our arteries. And we take medications, like statins, to decrease the buildup of these plaques, decreasing our chances of getting a heart attack.

Proclaiming that Alzheimer’s is not a disease and that dementia is due to normal aging is simply wrong and irresponsible.

Again, lots going on here:

1. Lisa seemed to feel our argument was that regarding “AD” as intimately related to aging would lead to therapeutic nihilism. However, the second half of our book involved a spirited argument for lifestyle, environmental, and other evidence-based changes that contributed to postponing brain aging, and we have continued publishing about this important area on the blog and in the recent scholarly literature. Just in the past year, Peter and I published an article in the Journal of Prevention of Alzheimer’s Disease titled “Prevention: Is the paradigm shifting”. And, along with our colleague Dr. Simon D’Alton, we published an article in the Journal of Alzheimer’s Disease titled “Adapting to dementia in society: a challenge for our lifetimes and a charge for public health”. With an absolute cure for AD looking more and more dubious, this is an area of immense importance, and, as we have written, the Alzheimer’s Association and other advocacy groups would do well to invest in educational campaigns to teach the public about lifespan risk factors, and commonsense actions we can take as individuals and communities. (Credit goes to Alzheimer’s Disease International for striking this message in their recent in their recent world reports, and to those who participated in the recent Blackfriar’s Consensus on promoting brain health).

Seven years later, the Myth of Alzheimer’s appears to be aging well

2. Cancer is an interesting comparison for Lisa to have drawn, because it is a disease that competes with being labeled the “most feared” by Americans. Over the last several decades, there have been strong advocacy movements to reduce the stigma and reframe cultural metaphors and meanings around cancer (Susan Sontag being one famous example). Scientifically, to say that cancer is one thing is just as equally as wrong as saying “Alzheimer’s” is one thing. Just as there are dozens of forms of cancer, there appear to be multiple “types” of Alzheimer’s disease. Where we now talk about making progress against specific types of “cancers” we should similarly transition to talking about multiple types of Alzheimer’s diseases. Aligning our speech more precisely with the scientific realities we face is, in itself, a form of progress.

Genetic mutations in the genes for presenilin-1, presenilin-2, and amyloid precursor protein CAUSE Alzheimer’s Disease 100% of the time. Malfunctions caused by mutations in these proteins result in a buildup of amyloid beta 42, causing clogs in neural synapses, causing dementia. This process causes disease. A malfunctioning presenilin-1, presenilin-2, or amyloid precursor protein is not a normal part of normal aging.

Lisa is a scientist, and this is a troubling argument for her to have made. She confuses rare cases of early onset Alzheimer’s disease (EOAD), which probably comprise less than 1% of all people labeled with AD, with the more prevalent late onset Alzheimer’s disease (LOAD). As others have recently argued, it seems in retrospect presumptive to have extrapolated a role for amyloid in all cases of AD based on genetic evidence suggesting a role for altered processing in EOAD. She also again offers full-scale endorsement of the amyloid cascade hypothesis, despite mounting scientific challenges to the hypothesis.

Yes, diagnosis is tricky today. We are still developing the tools sensitive enough to measure what needs to be measured to detect Alzheimer’s Disease. An MRI is not sensitive enough. A blood test won’t reveal it. Plaques (are you looking at diffuse or neuritic?) and tangles are not accurate correlates. Pencil and paper tests are only so telling. Again, think about cancer. Diagnosing cancer can include tests and scans that have false positives and false negatives. It can involve invasive surgeries to rule it in or out, to determine if the mass is benign or malignant. The diagnostic process may be imperfect, but we use every piece of information we have available today. Just because diagnosing Alzheimer’s today is difficult, it doesn’t mean that there isn’t a disease there to diagnose!

And we should diagnose Alzheimer’s if it’s there. Why? Because we can treat it with Aricept and Namenda. Because we can exercise, eat a Mediterranean diet, meditate, and stay mentally active. Convincing people that Alzheimer’s is not a disease and should not be diagnosed will needlessly keep people who are suffering with dementia away from doctors, away from Aricept and Namenda, away from planning responsibly for their future. In denial. Not to mention frustrated and scared.

It seems Lisa was over-estimating the value of AD drugs, which are minimally effective for some, feature substantial side effects, and are quite expensive. She also seemed to be suggesting that you can’t urge people to “exercise, eat a Mediterranean diet, meditate, and stay mentally active” unless you first diagnose them with dementia, which is an obvious fallacy. To her point about keeping people away from doctors – perhaps this isn’t such a bad idea?! People should certainly see their individual physician if they are concerned, but avoid overmedicalization. Not everyone desires a diagnosis of “mild cognitive impairment” or “probable AD”, and we shouldn’t presume as much.

Maybe, in the future, we will be able to treat this disease without saying the words “You have Alzheimer’s Disease.” My grandfather died in 1978 of heart failure at the age of 69. My father had high cholesterol in his fifties and went on a statin. He walks several miles a day. He is now 67, and his cholesterol levels are low. He has never had a chest pain. He was never told that he had heart disease. He was at risk. I hope he outlives my grandfather by a couple of decades.

Maybe, in the future, the treatment of Alzheimer’s will look more like this, more preventative. Family history, an amyloid-specific scan, and some neuropsychological testing show you’re at risk for developing Alzheimer’s, so you go on medication and stave off symptoms to maintain quality of life for as long as possible.

Growing old without Alzheimer’s.

But we have to bust Whitehouse and George’s myth and acknowledge first that Alzheimer’s is a disease.

A few final thoughts:

Let us remember that not all suffering is a disease and not all power to invent diseases should be given to scientists and physicians (or authors). Thankfully, the myths of Alzheimer’s – which have stood in the way of scientific progress, not to mention a more realistic and humane approach to adapting to the demographic realities of brain aging – continue to crumble.

At the end of the film, Alice (expertly played by Julianne Moore) is being read a play written by her younger daughter who is perhaps the second best developed character in the film. All her life, Lydia, the youngest daughter (played by Kristen Stewart), had resisted her mother’s efforts to send her to college and instead developed her theater career. She provides the love and care at the end of the film, in stark contrast to the husband (Alec Baldwin) who goes off the Mayo Clinic (home of “MCI”) for a better biomedical job, leaving his wife in New York in the care of the daughter. As we watch Alice listen contentedly to the lines of the play, one is left feeling that relationship, story, and humanity plays a much more important role in the lives of people with dementia and their carers than scientific academia does. We view this scene as a moment of profound overlap between Lisa’s creative vision and the ideas and values we espoused in The Myth of Alzheimer’s.

Comments

After reading Lisa Genova’s critique of the “Myth of Alzheimer’s I was really taken aback
by her comments. I have been invited to a special screening of “Still Alice” on next Thursday, which I will attend. After that I might be more knowledgable on her thoughts.
Until then, I need to say that I have read “The Myth” several times and do keep it as my
‘bible’ whenever I need to double check on a few things. You might recall I am an RN &
wrote a book on Prevention and care of Alzheimer’s Disease from experiences while tasking care of my husband diagnosed as ‘Possible Alzheimer’s’ Disease’ in 2011. Also
have been actively volunteering taking care of Alzheiner’s persons for over five years.
Have been thinking I need to write another book with the same title, plus Book 2,
because there has been so much more information obtained since 2011.
So after I see this screening I will give another comment.
Lavonne Steckbeck RN

As a retired architect, starting my “Second Journey,” I am advocating for changing long-term care here in Canada, influenced by my experience designing LTC facilities based on the household model. I appreciate Dr. Bill Thomas’s initiatives and am also impressed with the De Hogeweyk facility in the Netherlands that I visited a few years ago. It is successfully serving residents who have severe and extreme dementia.
My journey includes learning more about dementia. I have read “The Myth of Alzheimer’s” as well as “Dementia Beyond Drugs.” I have not yet read “The End of Memory” by Jay Ingram, but understand that it supports much of what you are advocating.
I would very much like to dialogue with you, especially about long-term care delivery. But at this moment I have a specific question. You talk about the “usual story about Alzheimer’s” and how it needs to change. At an open house at an Alzheimer’s facility in California recently, the presenter stated that “65% of caregivers die before those with Alzheimer’s who they are caring for.” I was surprised, as were others in attendance, and subsequently contacted the presenter, asking for the source of this statistic. To date she has not replied, leading me to suspect that this is part of “the story,” another myth. Would you agree?
Rudy Friesen

Finally getting to another comment about Lisa Genova’s critique of The Myth of Alzheimer’s. I did see the movie “Still Alice”. Indeed the movie was brilliantly played by Juliana Moore. Can see why she received the Best Actress award. However it depicted
Early Onset Alzheimer’s, which was not referred to much in the Myth of Alzheimer’s.
As for Lisa’s comments, she is far to young (showed her picture @ the beginning of the movie) to criticize anything in the book or give her opinion of the facts.
Maybe I’m wrong but how can a neuroscientist possibly know more about Alzheimer’s
than a MD,PhD and a PhD Assistant Professor who has worked in this field for many years? She evidently believes this mistaken fact.
When my husband was diagnosed with probable Alzheimer’s by a Neurologist, Psychologist,and a Psychiatrist in the mid 90′s, I was totally flabbergasted. Showed how totally confused the medical profession was @ that time. Thank goodness there are talented professionals today like Dr Whitehouse and Daniel George, M.Sc. who spend
their lives trying to uncover cause and treatment for this mysterious condition.
We don’t need people like Lisa Genovia telling us she has a better way. So much is yet
to be discovered. My book “Prevention and Care of Alzheimer’s Disease” might be a good start. Even that probably needs updating.